Part II: Recap on the 2009 Pituitary Patient Symposium on Cushing’s Syndrome

by Kristin

Most doctors agreed that cyclical Cushing’s syndrome is by far the most difficult form of Cushing’s to diagnose because it’s patterns can be erratic or the elevated levels are so mild that it’s difficult to recognize. Much of what was presented stated that both the patient and the doctor must be persistent in testing if cyclical Cushing’s is suspected.

Realize that elevated cortisol levels can be episodic, erratic or cyclical.
Cyclical Cushing’s should be suspected when the clinical suspicion of the syndrome if high but tests are negative.
Needs 3 peaks and 2 troughs to establish cyclical pattern.
One doctor suggested 28 consecutive days of either early morning collections of first urine or salivatory tests to confirm or deny cases of cyclical Cushing’s.

Many of the presenters encouraged patients to seek out endocrinologists that had a history of diagnosing & treating patients with Cushing’s. For patients who don’t have text book test results, they could easily slip through without getting a diagnosis because his/her doctor wasn’t experienced enough. The reoccurring theme throughout many of the presentations was that there’s not one test that will give a positive diagnosis every time. It was at this point they introduced the idea that diagnosing Cushing’s, whether it be cyclical Cushing’s, ectopic Cushing’s, an adrenal tumor or a pituitary tumor, is both a science and an art.

A heavy emphasis was also placed on the reoccurrance of pituitary tumors caused by Cushing’s. The statistics for reoccurrance were staggering.

It takes an average of 3 - 5 years for reoccurrnace to appear.
There is a 25% reoccurrnace rate for Cushing’s patients who are 5 years post-surgery.

The cause for reoccurrance is most often attributed to an incomplete tumor removal. Depending on the size of the tumor and where it’s located on the pituitary gland, it make extend into an area that is inoperable.

So what the treatment options for reoccurrance? Is there a definitive cure? Yes, there are treatment options, but there is no cure for pituitary tumors caused by Cushing’s - only remission. A second pituitary surgery is more common to treat a reoccurrance, but in extreme cases a bilateral adrenalectomy may be a more viable option. In extreme cases, radiosugery (gamma knife surgery) will be used to treat Cushing’s.

There was contradiction between the doctors on whether or not patients who had undergone treatment for Cushing’s were considered cured or in remission from the disease. Most agreed that a patient who had undergone an adrenalectomy for an adrenal tumor would be considered cured because the chance for reoccorrance was minimal to none, but were cautious to call patients who had undergone pituitary surgery cured because the reoccurance rate was higher. They preferred to use the term remission. Most of the presenters encouraged all patients effected by Cushing’s to have annual check-ups because there is always a chance for reoccurrance.

In the end it was apparent that more studies and longer studies need to be done to gain a deeper understanding of Cushing’s syndrome. There’s just not enough hard data out there that provides definitive answers one way or the other. Since the early days of Harvey Cushing, there have been great technological advances made in surgical treatments for Cushing’s syndrome, but there’s still a lot of unknowns when it comes to medication therapy.

*Note: The information I’m sharing from the Cushing’s symposium are not my personal views or thoughts on Cushing’s, the diagnosis of Cushing’s or the treatment of Cushing’s. This information is directly from the presentation that was given by various doctors that specialize in the diagnosis & treatment of Cushing’s.

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